Tuesday, August 11, 2015

Cover this child with Your love.

A few days ago we arrived home after Jake's first ever family vacation.  We packed up our car and drove to Cavendish, PEI for seven days of bliss.  Overall we drove about 3000 kilometers there and back - and that doesn't include the distance covered by the Ferry boats! The kids were not fans of the car and driving, but we got around it with the use of a dvd player, many naps, and overnight boat crossings.  For me, the whole experience was wonderful.  I always use the word normal like it is an oxymoron - but it is for us in many respects.  This was normality at it's finest.  The highlight of every day was sitting and playing poolside - we spent most of our time here.  We ate lots of fresh seafood, went to the beach, a different restaurant most nights for supper, Sandspit, Shining Waters, Ripley's Believe It or Not Museum, The Haunted Mansion in Kensington, Jurassic Bart's Dinosaur Museum, the Red Dirt Shirt shop, lots of Cows Ice Cream (Rated number one ice cream spot world wide!)...I can't even name it all right now.  But mostly it was fun.  Lots of fun.  Since Jake was involved it was sometimes pukey fun - no pun intended, but we replaced his feeds as well as we could and carried on.  I'll let these pictures tell the story...













3 days before we left for PEI Jake had a hard weigh in at the dietician.  A couple weeks ago we had celebrated because Jake hit the 25 lb mark - 25 lbs and 1 ounce! He hit the 15th percentile!!! Oh man, that was wonderful.  Then Jake got a cold and started vomiting more...and weighed in almost a pound less 3 days before our vacation, and stooped back down to the 3rd percentile.  Oh :(  I didn't post it on here because I wanted nothing to get our moods down for vacation.  We changed his feeding plan again - he is now getting 1300 ml of high calorie fluid in his G Tube each day, broken up into 5 feeds - the first at 6 am and the last at 11 pm.  So...if Jon and I look zombie like - this is why! Jake is going to be weighed in again this Thursday...I'm almost sick to my stomach thinking about it.  But I think he may have gained, even though the vomiting has not stopped.  It's a almost daily hassle for him and Dr. P his G Tube doctor prescribed him a new med today that we will try to see if it will help with the vomiting.  It's a new one that Jake has never had before - the other 3 reflux meds we have tried have not really worked for him.  Any prayers for weight gain would be so much appreciated.

If you are able to give blood, check this out...



It's a 2 day event and our goal is 100 donors.  You don't have to be local to us to donate in Jake's honour.  Here's what you do if you live away - To register go to www.blood.ca/joinpartnersforlife and use NLHE541250. If people don't have their donor card # tell them to select that they are a new donor. People can donate across Canada and still be counted!!!!  Given that the average donation is 3 pints of blood, if 100 people donate that will be 300 pints to save the lives of other Canadians.  We can do this guys! Join the FB group and let us know if you donate, and also please share the event with all your friends!  2nd Annual Blood Donor Clinic In Honour of Jake  .


We are also waiting on the results from genetic testing for Jake.  Some of you will know that hereditary hearing loss runs in my family - Georgia was tested as a baby and does not carry the gene.  Now we are waiting to hear if Jake is a carrier, if he is he will experience some degree of hearing loss.  There was further examination of Jake's DNA also done, but this test result will take much longer - they are basically looking to see if there are any abnormalities that would point to a reason for the development of his heart condition.  I'm fully not expecting that test to show anything - as is the doctor.  The hearing loss has been a source of some anxiety for me lately though, although I cope well with my profound-severe loss I don't want that for my son.  Please pray that this test comes back negative.  

Father, I pray that you will cover this child with Your love.  Psalm 33:22